Medicine and Health Sciences Commons^™

The College Campus, A Place Of Learning, And A Place Of Healing, Huma Bashir, Joshua Francis

Human Services Faculty Publications

The COVID-19 pandemic and its aftermath have precipitated a marked increase in mental health needs among college students. Lockdowns, the sudden shift to remote learning, and social distancing mandates have compounded existing challenges, highlighting a trend that has evolved over the past two decades. Despite heightened demand for mental health support, colleges struggle to meet these needs amid the emotional aftermath of COVID-19 effectively. Recognizing the pivotal role of higher education institutions in shaping future leaders and addressing and enhancing the mental well-being of the college community is imperative to foster an environment conducive to learning and healing. This paper …

Nutrition And Dietetics Educators’ Experiences Using Systems Thinking In Teaching, Erin E. Bergquist, Lyndi Buckingham-Schutt, Scott Smalley, Christina G. Campbell, Awoke Dollisso, Shuyang Qu

Journal of Dietetic Education

Objective: Describe educator experiences teaching systems thinking in nutrition and dietetics education. Design: Qualitative, semi-structured, online interviews. Setting: Educators teaching in accredited nutrition and dietetics programs. Participants: Purposive sample of thirteen Registered Dietitian Nutritionists (92% female, 77% with > 6 years teaching experience) from each U.S. census region and accredited program type. Phenomenon of Interest: Educators described experiences teaching systems thinking in accredited programs, including benefits. Analysis: Transcribed interviews were analyzed using qualitative grounded theory iterative coding. Excel was used for data organization and thematic coding analysis. Results: Educators described four themes when teaching systems thinking: (1) a holistic approach to …

Student Exposure To Andhii Improves Confidence With Applying The Nutrition Care Process, Casey Colin, Tad Campbell, Michel Harris, Avalon Mustafa, Lindsay Woodcock

Journal of Dietetic Education

The objective of this study was to explore if using ANDHII improves NCP confidence and documentation quality. This quasi-experimental trial was conducted with n = 43 undergraduate dietetic students. NCP confidence was measured before and after a traditional case study, and after an ANDHII case study. Documentation quality was measured using a validated quality audit tool. Confidence increased from time 1 to time 2 (p = 0.008), and from time 2 to time 3 (p = 0.003). Documentation quality was higher for the ANDHII documentation compared to the non-ANDHII documentation (p < 0.001) but lower when compared to the traditional ADIME (p = 0.03). Familiarizing students with ANDHII improved NCP confidence. Opportunities exist to improve ANDHII functionality and positively impact documentation quality.

Perceptions Of Assessment Processes, Enhanced Competency Integration, And Practice Preparation Among Future Education Model Graduate Program Alumni, Katherine Wiley, Pamela Rothpletz-Puglia, Laura Byham-Gray, Jennifer Tomesko

Journal of Dietetic Education

Background: Competency-based assessment (CBE) focuses on applying knowledge and skills to progress from novice to expert in clinical areas. The Future Education Model Graduate Program (FEMGP) incorporates CBE to meet enhanced competencies for nutrition and dietetics. Objective: This study explored FEMGP graduates’ perceptions of assessment methods and practices and perceptions of enhanced competency (EC) integration and preparedness for entry-level practice. Methods: This was a basic descriptive qualitative study. Ninety-eight graduates from one FEMGP in the northeastern US were recruited via email to participate in one of 13 virtual focus groups from April-June of 2023. Directed content analysis was conducted with …

Registered Dietitian Nutritionists’ Knowledge, Confidence, And Experiences With Treating Trafficked Individuals: A Call For Interprofessional Continuing Education, Christen C. Cooper, Lydia Mcroberts

Journal of Dietetic Education

Background: Victims of human trafficking (HT) frequently face malnutrition, dehydration, low food security, and infections. When identified, victims of HT are normally treated with interprofessional team (IPT) care that often excludes Registered Dietitian Nutritionists (RDNs). Although RDNs are trained to treat these conditions, they may lack knowledge, confidence, and skills, for working with this population, as well as the opportunities to work on such IPTs. To date, no study has explored RDNs’ knowledge of or work with individuals who are trafficked. Objective: To explore RDNs’: HT knowledge, confidence in the ability to work with victims of HT, and barriers to …

Learning At Diabetes Camp: Experiential And Interprofessional Opportunities For Dietetics Students, Mallory Mount, Mary Kathryn Gould

Journal of Dietetic Education

Diabetes camp is helpful in providing hands-on learning experiences and interprofessional learning opportunities through immersive experiences. Currently, there is little research comparing the changes in knowledge and perception during experiential learning in dietetics students at a residential diabetes camp. This longitudinal qualitative case study explored the knowledge, perceptions, confidence, and empathy gained by four dietetics students during experiential learning at the camp. Qualitative research methods (interviews, observations, "photovoice," journals, and focus groups) were used to explore and understand participants’ experiences of hands-on involvement with type one diabetes, and what they learned at camp that cannot be learned in a classroom. …

Emphasizing Interprofessional Education Through A Virtual Case Study In A Medical Nutrition Therapy Course, Natalie B. Allen, Traci A. Garrison, Wendy R. Jackson, Bonnie K. Slavych

Journal of Dietetic Education

This observational research presents multi-year findings of a project using an online case study implemented in an undergraduate Medical Nutrition Therapy class that fostered interprofessional collaboration among students from various healthcare disciplines. The case study focused on a fictional patient with an ischemic stroke and all work was virtual. Students from various allied healthcare fields were represented: dietetics and nutrition, occupational therapy, speech-language pathology, and social work. Both undergraduate and graduate students participated in developing a virtual care plan for the patient, with an emphasis on helping students explain their role to the team, while simultaneously learning how to collaborate …

Interprofessional Education In Dietetics Programs: Student And Director Perspectives, Mckenna Voorhees, Heidi J. Wengreen, Mateja R. Savoie-Roskos, Katie N. Kraus

Journal of Dietetic Education

Background: Interprofessional Collaborative Practice (IPCP) supports optimal healthcare outcomes; accordingly, dietetic program accreditation standards require interprofessional-related education (IPE). Objective: To explore IPE implementation and evaluation of IPE in dietetics curricula, and how these relate to director confidence in students and student satisfaction. Main Outcome Measures: IPE approaches (lectures, assignments, direct experience, case studies/facilitated multidisciplinary interactions), Timing of IPE (years 1, 2, 3, 4, other), director confidence (10-level scale), student IPE satisfaction (7-level scale) Statistical Analyses Performed: The strength and direction of correlation between number of IPE methods with director confidence/student satisfaction, and time spent on IPE with director confidence were …

Editors' Message, Sara Tamsukhin, Christine Meissner

Journal of Dietetic Education

In this issue of the Journal of Dietetic Education, we share a special section for interprofessional education (IPE). The articles highlight potential avenues for interprofessional education in dietetics programs and continuing education for dietetics professionals. Each article offers insight into the landscape of dietetic education and the need for IPE. Dietetic students learn from IPE experiences in their programs. However, additional IPE occurs through outside experiences and throughout a dietitian’s career.

Cover And Front Matter, Sara Tamsukhin, Christine Meissner

Journal of Dietetic Education

No abstract provided.

Neighborhood Socioeconomic Context Predicts Pediatric Asthma Exacerbation, Ashley W. Kranjac, Zeev N. Kain, Louis Ehwerhemuepha, Michael Weiss, Brooke N. Jenkins

Sociology Faculty Articles and Research

Causes of asthma exacerbation in children have been studied extensively at the individual level, but contributions of neighborhood-level factors are less explored. We test which distinctive residential characteristics produce variation in uncontrolled asthma among pediatric patients. We extracted electronic medical record data from pediatric patients living in Southern California and used multilevel modeling techniques to isolate which neighborhood characteristics drive inequitable asthma control. Above and beyond the individual-level factors known to predict inadequate disease control, neighborhoods with greater concentration of non-Hispanic black residents (odds ratios [OR] = 1.02; 95% confidence interval [CI]: 0.99-1.03; P < .05), higher proportions of female-headed households (OR = 1.01; 95% CI: 0.99-1.01; P < .05), and higher levels of ambient air pollution (OR = 1.05; 95% CI: 1.01-1.10; P < .001) associate with greater odds of asthma exacerbation. The interplay between community characteristics and asthma management during childhood is complex, and place-based initiatives are needed to narrow the gap in asthma exacerbation.

Trust Criteria For Artificial Intelligence In Health: Normative And Epistemic Considerations, Kristin Kostick-Quenet, Benjamin H Lang, Jared Smith, Meghan Hurley, Jennifer Blumenthal-Barby

Center for Medical Ethics and Health Policy Staff Publications

Rapid advancements in artificial intelligence and machine learning (AI/ML) in healthcare raise pressing questions about how much users should trust AI/ML systems, particularly for high stakes clinical decision-making. Ensuring that user trust is properly calibrated to a tool's computational capacities and limitations has both practical and ethical implications, given that overtrust or undertrust can influence over-reliance or under-reliance on algorithmic tools, with significant implications for patient safety and health outcomes. It is, thus, important to better understand how variability in trust criteria across stakeholders, settings, tools and use cases may influence approaches to using AI/ML tools in real settings. As …

07.08.2024 Orsp Connect, Liz Williamson

ORED Newsletter

NSF research infrastructure, IDS (Institute for Data Science), NSF Mentoring Plan Requirement, NSF Pilot for Startups and Small Businesses

Innovation Path At Institute For Protein Design Of Washington University And Its Enlightenment For Construction Of New Life Sciences R&D Institutions, Runzhou Zhao, Ming Ni, Yunzhi Fa, Xiaochen Bo, Jian Jiao

Bulletin of Chinese Academy of Sciences (Chinese Version)

The Institute for Protein Design (IPD) at the University of Washington is a pioneering local and state-supported non-profit scientific research institution. Since its establishment in 2012, IPD has seized the opportunity of AI for Science and open science, and continuously enhanced its capabilities of fundamental innovations, breakthrough technologies, and industrial impact. We summarized five factors contributing to IPD’s development, including focusing on the cutting-edge issues of basic scientific research to gain a first-mover advantage and then further expand, integrating AI-enhanced digital tools and solid experimental validations, facilitating the integrated development of innovation and industrial chains, giving full play to the …

Self-Harm In Female Youth With Undiagnosed Adhd: Implementing American Academy Of Pediatrics Screening Guidelines, Roselie M. Woodard

Dissertations

Attention deficit hyperactivity disorder (ADHD) is a common neurodevelopmental disorder characterized by inattention, hyperactivity, and impulsivity. If undiagnosed or untreated, ADHD can lead to severe psychosocial issues such as academic failure, substance abuse, unplanned pregnancy, and incarceration. The financial burden in the U.S. from diagnostic errors creates an immense, rising fiscal impact. Early diagnosis and management are crucial to prevent these complications.

Females with ADHD, particularly those with the inattentive subtype, often face diagnostic challenges due to symptom masking and over-compensation. This results in poorer cognitive functioning and self-esteem compared to males with ADHD. ADHD is linked to autonomic nervous …

Students’ Knowledge And Attitude Towards Plagiarism: A Case Of Lusaka Apex Medical University Students, Dalitso Mvula, Treasure Chisakula

Library Philosophy and Practice (e-journal)

Laws guide societies in the world. These laws are meant to create an environment that ensures citizens’ rights are respected. The same happens in academia. There are guidelines that students follow in the execution of their assignments, examinations and research in higher institutions. These guidelines are meant to ensure that there is no any form of academic dishonesty being perpetuated by the students. This paper investigated Lusaka Apex Medical University students’ knowledge and attitude towards plagiarism. The study sought to assess the knowledge of LAMU students towards plagiarism, examine the attitude of LAMU students towards plagiarism, assess factors that foster …

Prediction Of Mild Cognitive Impairment Status: Pilot Study Of Machine Learning Models Based On Longitudinal Data From Fitness Trackers, Qidi Xu, Yejin Kim, Karen Chung, Paul Schulz, Assaf Gottlieb

Faculty, Staff and Student Publications

BACKGROUND: Early signs of Alzheimer disease (AD) are difficult to detect, causing diagnoses to be significantly delayed to time points when brain damage has already occurred and current experimental treatments have little effect on slowing disease progression. Tracking cognitive decline at early stages is critical for patients to make lifestyle changes and consider new and experimental therapies. Frequently studied biomarkers are invasive and costly and are limited for predicting conversion from normal to mild cognitive impairment (MCI).

OBJECTIVE: This study aimed to use data collected from fitness trackers to predict MCI status.

METHODS: In this pilot study, fitness trackers were …

Using An Evidence-Based Practice Nurse Recognition Practice To Improve Job Satisfaction, Hali Bianchi

Student Scholarly Projects

Practice Problem: The project targeted low job satisfaction and high nurse turnover in a Central Florida bone marrow transplant unit, impacting patient care and costs.

PICOT: (P) For registered nurses (RNs) on the bone marrow transplant unit, (I) does implementing an evidence-based practice employee recognition program (C) compared to no employee recognition program, (O) lead to an increase in job satisfaction (T) over 10 weeks?

Evidence: The evidence supported the effectiveness of meaningful recognition programs, such as personalized verbal acknowledgment from leadership, in boosting job satisfaction among nurses.

Intervention: The intervention involved nurse managers using a weekly employee recognition …

The Role Of Positive Affect In Asthma Control And Symptom Severity In Adolescents, Brooke N. Jenkins, Logan T. Martin, Jill S. Halterman, Judith T. Moskowitz, Laura M. Glynn, Pornchai Tirakitsoontorn, Sunil Kamath, Zeev N. Kain

Psychology Faculty Articles and Research

Introduction

We test the effects of positive affect and its arousal subscale components of calm, wellbeing, and vigor on asthma control and symptom severity in adolescents with moderate to severe asthma. Additionally, we test whether positive affect (and its arousal components) moderate how stress impacts asthma control and symptom severity.

Methods

Adolescents with asthma (N = 66, ages 12–17) completed brief surveys 4 times a day for 7 days reporting on their positive affect, stress, and asthma symptom severity and conducted a morning peak expiratory flow assessment each day. Asthma control and psychological asthma triggers were assessed at the …

A Confirmatory Factor Analysis Of The Psi-4-Sf In Parents Of Children With Autism Spectrum Disorder, Paige Weir

LSU Doctoral Dissertations

The factor structure of the Parenting Stress Index - Short Form (PSI-4-SF) was evaluated among parents of children with autism spectrum disorder (ASD). Two hypotheses were tested: (1) the original PSI-4-SF model would yield an unsatisfactory fit, and (2) a three-factor alternative model would improve fit compared to the original and other models. A sample of 205 parent-child dyads was analyzed using confirmatory factor analysis (CFA) with the lavaan package in R Studio. Preliminary analyses included descriptive statistics, normality checks, and assessments of skewness and kurtosis. Results supported the first hypothesis, showing poor fit indices for the original PSI-4-SF model. …

Chimeric Antigen Receptor-Induced Antigen Loss Protects Cd5cart Cells From Fratricide Without Compromising On-Target Cytotoxicity, Royce Ma, Mae Woods, Phillip Burkhardt, Noah Crooks, Dayenne G Van Leeuwen, Daniil Shmidt, Jacob Couturier, Alexandre Chaumette, Divya Popat, Laquisa C Hill, Rayne H Rouce, Sachin Thakkar, Aaron F Orozco, Alexandre F Carisey, Malcolm K Brenner, Maksim Mamonkin

Center for Medical Ethics and Health Policy Staff Publications

Chimeric antigen receptor T cells (CART) targeting lymphocyte antigens can induce T cell fratricide and require additional engineering to mitigate self-damage. We demonstrate that the expression of a chimeric antigen receptor (CAR) targeting CD5, a prominent pan-T cell antigen, induces rapid internalization and complete loss of the CD5 protein on T cells, protecting them from self-targeting. Notably, exposure of healthy and malignant T cells to CD5.CART cells induces similar internalization of CD5 on target cells, transiently shielding them from cytotoxicity. However, this protection is short-lived, as sustained activity of CD5.CART cells in patients with T cell malignancies results in full …

Understanding The Needs Of Gender-Diverse Youth And Young Adults And Their Staff Members In Homeless Shelters And Supported Housing, Sharon Gutman, Ashley Choi, Alexis Kearney, Margaret Swarbrick Dr

The Open Journal of Occupational Therapy

Background: Gender-diverse youth experience twice the risk for homelessness as their same-age cisgender peers and report experiencing discrimination in homeless shelters and supported housing.

Method: Eighteen participants (9 gender-diverse residents and 9 staff members) were interviewed individually to understand their experience of and needs in these settings.

Results: The major findings included: (a) Gender-diverse service recipients felt unsafe and vulnerable in these facilities. Sharing space in which to carry out occupations of vulnerability often triggered anxiety and PTSD. (b) Gender-diverse service recipients felt that staff members did not understand how cumulative trauma adversely affected participation in programmatic …

Developing Public-Private R&D Consortia To Accelerate Alzheimer’S Disease Drug Development, Joel West, Paul Olk

Management: Faculty Scholarship

Efforts to accelerate Alzheimer's disease (AD) drug development have been spurred on by the creation of open science, public-private R&D consortia. An R&D consortium provides an improved structure for generating and disseminating AD knowledge across a range of organizations while also aligning their interests. Drawing from archival and interview data collected on 46 public-private R&D consortia focused wholly or in part on AD, we uncover two important innovations: the creation of novel consortium types that facilitate coordination beyond the individual consortium, and the practice of organizations joining multiple consortia. Collectively these innovations provide member organizations with different pathways for advancing …

Psychological Profile Of Brazilian Jiu-Jitsu Athletes, Leandro De Lorenco-Lima

Doctoral Dissertations and Projects

Martial arts and combat sports have been shown to influence several desirable psychological factors positively. This quantitative study aimed to explore the differences in mental strength, resilience, grit, self-efficacy, self-control, aggression, life satisfaction, and mental health between belt ranks in Brazilian Jiu-Jitsu (BJJ) athletes. A sample of 410 BJJ participants (323 males and 87 females) from 18 to 60 years of age was included in this study. Data was collected anonymously via Google Form and included the Mental Strength Scale, Brief Resilience Scale, Grit Scale, General Self-Efficacy Scale, Brief Self-Control Scale, Brief Aggression Questionnaire, Satisfaction with Life Scale, Mental Health …

Brain-Age Prediction: Systematic Evaluation Of Site Effects, And Sample Age Range And Size, Yuetong Yu, Hao-Qi Cui, Shalaila S Haas, Faye New, Nicole Sanford, Kevin Yu, Denghuang Zhan, Guoyuan Yang, Jia-Hong Gao, Dongtao Wei, Jiang Qiu, Nerisa Banaj, Dorret I Boomsma, Alan Breier, Henry Brodaty, Randy L Buckner, Jan K Buitelaar, Dara M Cannon, Xavier Caseras, Vincent P Clark, Patricia J Conrod, Fabrice Crivello, Eveline A Crone, Udo Dannlowski, Christopher G Davey, Lieuwe De Haan, Greig I De Zubicaray, Annabella Di Giorgio, Lukas Fisch, Simon E Fisher, Barbara Franke, David C Glahn, Dominik Grotegerd, Oliver Gruber, Raquel E Gur, Ruben C Gur, Tim Hahn, Ben J Harrison, Sean Hatton, Ian B Hickie, Hilleke E Hulshoff Pol, Alec J Jamieson, Terry L Jernigan, Jiyang Jiang, Andrew J Kalnin, Sim Kang, Nicole A Kochan, Anna Kraus, Jim Lagopoulos, Luisa Lazaro, Brenna C Mcdonald, Colm Mcdonald, Katie L Mcmahon, Benson Mwangi, Fabrizio Piras, Raul Rodriguez-Cruces, Jessica Royer, Perminder S Sachdev, Theodore D Satterthwaite, Andrew J Saykin, Gunter Schumann, Pierluigi Sevaggi, Jordan W Smoller, Jair C Soares, Gianfranco Spalletta, Christian K Tamnes, Julian N Trollor, Dennis Van't Ent, Daniela Vecchio, Henrik Walter, Yang Wang, Bernd Weber, Wei Wen, Lara M Wierenga, Steven C R Williams, Mon-Ju Wu, Giovana B Zunta-Soares, Boris Bernhardt, Paul Thompson, Sophia Frangou, Ruiyang Ge, Enigma‐Lifespan Working Group

Faculty, Staff and Student Publications

Structural neuroimaging data have been used to compute an estimate of the biological age of the brain (brain‐age) which has been associated with other biologically and behaviorally meaningful measures of brain development and aging. The ongoing research interest in brain‐age has highlighted the need for robust and publicly available brain‐age models pre‐trained on data from large samples of healthy individuals. To address this need we have previously released a developmental brain‐age model. Here we expand this work to develop, empirically validate, and disseminate a pre‐trained brain‐age model to cover most of the human lifespan. To achieve this, we selected the …

Impact Of Efavirenz On Hormone-Positive Breast Cancer Survival In Women Living With Hiv, Arthur T Johnson, Taolo Ntloedibe, Jose Euberto Mendez Reyes, Mogomotsi S Matshaba, Scott L Dryden-Peterson, Elizabeth Y Chiao

Center for Medical Ethics and Health Policy Staff Publications

Women living with HIV and breast cancer have poorer survival than HIV-negative women. Efavirenz-estrogen interactions are documented; however, the survival impact is unknown. Survival between women with estrogen-receptor positive breast cancer taking efavirenz (n = 38) and nonefavirenz regimens (n = 51) were compared. The 5-year overall-survival was 48.9% [95% confidence interval (CI) 33.0-72.2 and 51.1% (95% CI 34.0-76.8)] in the efavirenz and nonefavirenz groups, respectively suggesting efavirenz is unlikely driving poorer survival in women living with HIV and estrogen-receptor positive breast cancer.

A Mixed Methods Acceptability And Feasibility Study Of A Patient-Initiated Approach To Increasing Weight Communication In Primary Care, Jocelyn E. Remmert, Leon Mccrea, Nicole T. Crane, Adam Gilden, Meghan L. Butryn

The Journal of Integrated Primary Care

Background: Weight discussions between patients and physicians can have a positive impact on patients’ health, yet they occur infrequently in primary care. No study to date has promoted patient-initiated weight discussions. This study aimed to test the feasibility, acceptability, and explore trends of the effect of a waiting room-based pamphlet intervention to promote patient-initiated weight discussions.

Methods: Adults (n=60) with overweight or obesity attending a primary care appointment were recruited from the waiting room and randomized to receive the intervention pamphlet or to a non-intervention control condition. All participants attended their appointment and completed post-appointment assessments.

Results: Three …

Case Report Of A Brief Modular Anxiety Intervention For Integrated Primary Care: Addressing Clinician Feasibility Concerns And Barriers To Using Manualized Treatments, Katherine Buckheit, Robyn L. Shepardson, Luke Mitzel, Risa B. Weisberg, Stephen A. Maisto, Jennifer Funderburk

The Journal of Integrated Primary Care

Individuals with anxiety symptoms commonly present in primary care settings and prefer behavioral health (versus pharmacotherapy) treatment, but behavioral health interventions are underutilized. Primary care behavioral health (PCBH) models, in which embedded behavioral health providers deliver behavioral treatment in primary care, may help address the gap in provision of anxiety treatment. However, evidence-based anxiety treatment options feasible for delivery in primary care are limited, and clinicians often report concerns about using manualized interventions. Recent recommendations by the U.S. Preventative Services Task Force to increase anxiety screening among adults in primary care may result in increased identification of individuals with anxiety …

Vysion Software, Isaias Hernandez-Dominguez Jr, Chander Luderman Miller

2024 Symposium

Vision loss presents significant challenges in daily life. Existing solutions for blind and visually impaired individuals are often limited in functionality, expensive, or complex to use. Vysion Software addresses this gap by developing a user-friendly, all-in-one AI companion app that provides features including text summarization, real-time audio descriptions, and AI-enhanced navigation. This project details the development plan, initial functionalities, and future vision for Vysion Software.

The Impact Of Clinical Genome Sequencing In A Global Population With Suspected Rare Genetic Disease, Erin Thorpe, Taylor Williams, Chad Shaw, Evgenii Chekalin, Julia Ortega, Keisha Robinson, Jason Button, Marilyn C Jones, Miguel Del Campo, Donald Basel, Julie Mccarrier, Laura Davis Keppen, Erin Royer, Romina Foster-Bonds, Milagros M Duenas-Roque, Nora Urraca, Kerri Bosfield, Chester W Brown, Holly Lydigsen, Henry J Mroczkowski, Jewell Ward, Fabio Sirchia, Elisa Giorgio, Keith Vaux, Hildegard Peña Salguero, Aimé Lumaka, Gerrye Mubungu, Prince Makay, Mamy Ngole, Prosper Tshilobo Lukusa, Adeline Vanderver, Kayla Muirhead, Omar Sherbini, Melissa D Lah, Katelynn Anderson, Jeny Bazalar-Montoya, Richard S Rodriguez, Mario Cornejo-Olivas, Karina Milla-Neyra, Marwan Shinawi, Pilar Magoulas, Duncan Henry, Kate Gibson, Samuel Wiafe, Parul Jayakar, Daria Salyakina, Diane Masser-Frye, Arturo Serize, Jorge E Perez, Alan Taylor, Shruti Shenbagam, Ahmad Abou Tayoun, Alka Malhotra, Maren Bennett, Vani Rajan, James Avecilla, Andrew Warren, Max Arseneault, Tasha Kalista, Ali Crawford, Subramanian S Ajay, Denise L Perry, John Belmont, Ryan J Taft

Center for Medical Ethics and Health Policy Staff Publications

There is mounting evidence of the value of clinical genome sequencing (cGS) in individuals with suspected rare genetic disease (RGD), but cGS performance and impact on clinical care in a diverse population drawn from both high-income countries (HICs) and low- and middle-income countries (LMICs) has not been investigated. The iHope program, a philanthropic cGS initiative, established a network of 24 clinical sites in eight countries through which it provided cGS to individuals with signs or symptoms of an RGD and constrained access to molecular testing. A total of 1,004 individuals (median age, 6.5 years; 53.5% male) with diverse ancestral backgrounds …